Living With A TBI

I was a successful business woman living life until being rundown by a car changed my world. I now live with a traumatic brain injury, ptsd, blindness, and physical ailments. I have my humor that keeps me wanting to fight and share my story.

[wr-y]

Connections

Social behavior prompts humans to have connections for a variety of reasons. Social connections may enhance quality of life, social interaction, opinions, and sparks the exchange of ideas. Others use connections for gossip, enticement, or to antagonize people. TBI survivors see connections as a challenge.

Social connections may cause discomfort, negative responses, and social ineptness. A basic skill of engaging in casual conversation is lost. Another social discomfort from a TBI view is lack of education in the public eye about traumatic brain injuries. Other survivors hesitate to share that they live with a TBI due to public perception and change in behavior by non TBI individuals. TBI survivors wanting social interaction stop them selves because of the environment being too loud, multiple conversations happening at once, confusion with social cues, and processing speed being slow.

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Absence of in person TBI support groups

TBI survivors appear to benefit from in person support groups. The flow of conversation and the interaction amongst survivors allows an individual to express their challenges. It also allows them to share stories with others that have experienced common situations and events. The feedback provided by participants may motivate or challenge a survivor to be proactive or take no action. The dynamics of the support group allow a TBI survivor to freely express shortcomings and receive alternative actions that would not normally be carried out. The support group also allows the space for survivors to freely communicate their challenges when dealing with family and healthcare providers.

Discussions in support groups range from living with the TBI to methods of remembering and sharing challenges when dealing with family members. The modalities that are suggested may be a partial solution to a problem and it could also lead to an open mind of utilizing humor to enhance the exchange of ideas. Support groups though may also leave a person feeling like providers have given them partial lies or false hope. Potential solutions shared may have a survivor feeling reluctant and uncertain due to consistent successes realized through brain function. Support groups could be described as, at times, having too many cooks in the kitchen or one being their own island.

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“The Power of Positive Thinking” by Norman Vincent Peale.

The power of thinking positively, is it a choice? Or is it an escape that the mind plays when it can not handle its current scenario. Norman dealt with the horrors of being in a concentration camp through avoidance and choosing to focus on a small object. The human mind can be challenged to cope with trauma and the exhaustion of living with the consequences of catastrophic injuries. Like Norman we have to choose to fight the temptation of giving in to the day to day fatigue, half truths, and our own mind to cope with debilitating injuries. We can choose to be stagnant and give in to discomfort and pain or we can contest our own resolve when dealing with professionals. We can also lie to our selves and stay positive no matter what challenges we face. We live and adapt in the environment.

Professionals may recognize progress but your self analysis tells you, you have not made any progress because you don’t perform like you used to. Others will comment “This is a new you” but these is no new to learn because your brain can not comprehend the new environment. Unlike Norman who survived a concentration camp and published his journals, TBI survivors can not escape the debilitating effects of a damaged brain. A TBI survivor can not block the reality of knowing their performance will always be diminished by physical and emotional limitations. Our functional existence depends on our brain functioning at an optimal level. When these signals are disrupted we can not escape by focusing on simple objects. Our perspective is also altered and we manage it without any handbooks or instruction manuals. We cope in moments of confusion, myopic thinking, or in a box that has nothing but spaghetti wires.

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Myth

A traumatic brain injury (TBI) leaves individuals with much uncertainty and daily challenges. We are informed not to engage in legal, financial, or contractual decisions. This is also dependent on the severity of the TBI, which leads to survivors having more limitations than others. We also hear common concepts about struggling with memory, organization, social activities, and family dynamic concerns. We boldly are told the TBI experience is vastly different for everyone.

Why do I day this is a myth? We all have memory issues, organizational problems, and find it difficult to be a part of social activities. TBI survivors have difficult finding the right world, follow-up up questions are not easy, and we lack coping skills. We experience fatigue, we become overwhelmed, and we can’t handle too much stimulation. We don’t always know how to keep our brain from thinking in spite of our brain not knowing what our brain is think about, or knowing what is in our minds. It just spins. Many of us with a TBI don’t do well with abstract thinking and we have difficulty anticipating situations and events. Thus, the statement “everyone’s TBI experience is different” is just a myth.

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Coping without solutions

Some of us TBI survivors will experience a catastrophic event that affects our lives. We may experience changes in our ability to walk, cognitive challenges, and unfortunate diseases deteriorating our physical health. Accidents happen that take away our physical freedoms. We live with frustrations ranging from seeking medical care, finding resources, and support systems. Some of us suffer through these frustrations in silence, in isolation, or through empty promises. We live with these challenges but never hear potential solutions. We become overwhelmed, frustrated with the system, or we simply give up. We may seek help from outsiders, friends, or family (if available) but none find the right mix of solutions.

The challenges of our health and physical limitations may be too great, too broad, and we stay stuck. There may occur times our needs are overwhelming to identify, not enough support systems, and community outreach is not always possible due to transportation or other logistics. We identify solutions through mishaps, stubbornness not to give up but these are short term solutions, not permanent ones. Finding solutions could also be limited by the person’s own fatigue, not knowing how to navigate social services, and lack of finding good community advocates to help in filing these gaps. We lack understanding regarding the needs of individuals with a traumatic brain injury and public education about TBIs is limited. Without proper solutions to maintain any level of independence finding solutions or starting the conversation for help will be daunting. Most of us will continue to live by trial and error. Solutions that only fit unique situations but are never long lasting.

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Weekend wandering

Our lives before a brain injury, we planned and looked forward to weekend activities. Some of us would plan grilling or barbecuing, going to a concert, going on a weekend getaway, or spending time at the lake. We may also have planned to do yard work, clean the garage, helping a neighbor or friend, or just hanging out at home. All of these events seem natural and are done with ease. We do these things with out hesitation, preplanning, or thinking how we will feel after the event. Now living with the TBI, these options do not happen like flipping a light switch. We have to consider fatigue, ability to handle the task, or the possibility of becoming overwhelmed.

Participating in weekend events requires forming a connection, friendship, or seeking out opportunities for helping neighbors. TBI survivors do not have a recipe book on how to find these individuals and most of us second guess our limitations. The apprehension of engaging is uncomfortable and the ideas of making small talk is difficult. We do not have a step by step guide to manage social situations and we don’t practice the art of connecting with others. We stay stuck, isolated, and withdraw from society.

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Fitting in

It is part of our societal nature to belong to a group, an entity, or a pack. We tend to find these characteristics through commonality, interests, and our own personal picadillos. After a TBI these human characteristics do not come with ease. We tend to define our existence as an island that has selective components and we don’t know if they are the right parts to fit in.

Some of us find it hard to carry conversation with multiple people. The environment influences the level of participation. Another characteristic of fitting in is learning new methods of establishing small talk in group settings. Some TBI survivors find it difficult to pick up on certain social queues, like hyperbole or idiomatic expressions. We are also challenged in processing how to react to metaphors and read body language. TBI survivors experience frustration when they can’t express ideas quickly. Their comments may not fit the flow of conversation.

Another difficulty living with a TBI is the brain’s ability to follow abstract thinking. Others are challenged or limited by predicting or perceiving outcomes. Many of us also have challenges gaging tone, inflection, and interjecting humor in every day communication. TBI survivors learn of these challenges after leaving rehab and are left with no strategies to cope with these situations. Our options are limited by trial and error, avoiding interactions, or choosing not to engage because it’s too uncomfortable.

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Hobbies after a TBI

Many of us have activities enjoyed before a TBI. We have limited conversations of finding activities we presently would like to participate in but are not physically capable of participating in. Some of us may have limited opportunities enabling us to do something enjoyable. The common struggle is how can we find participation that will bring some comfort and distraction from our every day struggles. There was a time when hiking, camping, going for walks, sitting at a lake, was pleasant, calming, and brought relaxation. The anticipation of doing these activities brought excitement, fun, and enjoyment.

Now the challenge is how do we allow our selves to find the same level of enjoyment. Some of us will have limits on how far we can walk. Others will have to find ways to manage balance. Some of us have to find opportunity to seek out an individual or non-profit who will provide these opportunities. Connecting with a community is an obstacle because we tend to self-isolate and interacting with people is hard work. We lack strategies to overcome the isolation. We have limited knowledge of the opportunities, communities, non-profit organizations, and volunteers who provide these resources.

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Gaps in finding professional help for TBI

Finding help from medical professionals is limited by the knowledge possessed by the medical provider relating to a traumatic brain injury. One of several challenges we face is when the medical provider shares with the patient that they lack basic knowledge related to a TBI. It is also frustrating when they make assumptions based on what is common or what has been stated repeatedly in medical journals instead of aiming to understand how TBI affects their client in particular. TBI treatment and support is not a one size-fits-all ordeal, TBIs can manifest themselves very differently between different kinds of injuries and different kinds of people. The patients expectation seeking appropriate medical care is diminished by finding restrictive solutions that aren’t accommodating for the challenges faced by people with a TBI. We lack confidence in the medical field because we are left with unanswered questions, limited progress, and we still have uncertainty about seeking different modalities of treatment.

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One of many harsh realities of living with a TBI

All of us work hard to develop skills and some of those skills are mastered better than others. Some of us communicate better than others, others are better writers, and others turn out to bed better in the kitchen. Post TBI, the tools to adequately develop new abilities to carry us through life are not easily found. The challenge of finding a group of professionals who have adequate knowledge about TBI and finding apps to aid in skill development is an ongoing process that never seems to get any closer to bring completed. We are not given a rule book, rather we are given endless ideas that have mixed results.

The various inputs we receive from professionals, TBI survivors, and trial and error can lead to frustration, limited success, and may still leave doubt in the individual when grasping new capabilities. The TBI survivor is constantly making an effort to understand how the brain applies information. Our abilities are either overestimated or underestimated and we never seem to be able to find a path that stays constant. Working with a broken brain is also influenced by fatigue, pain, becoming overwhelmed, and how much damage was done to various parts of the brain.

[wr-y]

What they don’t tell you in rehab

You leave the trauma unit and now your new adventure starts going into in patient rehab. We work on PT skills, OT skills, speech therapy, but no one addresses how to navigate the daily challenges that come with living with a traumatic brain injury (TBI). The discussion surrounding this new, unfamiliar world is limited. No indication of how to seek direction for this new existence once you leave the walls of the rehab. The cliche statements such as “You are doing well, you will be fine!” Or “This is a new you” are empty, meaningless, and so obvious that they carry no weight. These platitudes are well intentioned but come a cross as patronizing and makes the care provided feel impersonal. TBI rehabilitation teaches one how to stand up again and take the first steps, but sends you in a life long journey without a map.

Time may have a different meaning to a TBI survivor. The same sunrise you witness before your injury may feel completely alien and unknown after your injury. Finding purpose post TBI feels more defined by your circumstances and feels much more out of your control. Similar to driving down a long road for hours on end, you begin to lose track of time. The walls between days, weeks, and months starts to fall and it feels like one long, drawn out experience. Every day is full of tasks that present obstacles that you don’t expect and feel insurmountable. One tries to understand the new environment but the brain is spinning and empty and you feel like an empty chair, an entity in the world but empty. Post TBI life can feel like inhabiting a world where time no longer moves forward in steps, purpose is imposed rather than chosen, and the mind oscillates between overload and emptiness.

[wr-y]

Hello everyone, my name is wr-y and 12 years ago I was in an accident left with catastrophic injuries. I now live with a traumatic brain injury (TBI) and I am also completely blind. Living with a TBI is a struggle and finding proper medical care had been a significant challenge.

I was struck by a car from behind and did not receive any compensation. Geicko insurance and the driver were not found at fault. Finding a visually impaired pedestrian 100% at fault is a travesty. Getting hit from behind and being left with life altering injuries makes it difficult to understand how a jury found the pedestrian at fault. I have been working to find ways to correct this injustice.

I have created this page to share my story, to share the challenges in finding proper care from medical professionals, to share the challenges based in a lack of proper support from the state, and to work to find the proper legal support to fight against the injustices I have faced.